Phantom Pain Doulas

After a recent experience with phantom pain, I was thinking about how helpful it could be to have phantom pain doulas.

What is phantom pain? Phantom limb sensation is something that is experienced by amputees where it feels like the missing limb is still there.

It can be just sensation. For example, any time I talk about or write about phantom pain or about my missing leg, I feel a tingling throughout my “right leg”, even though my right leg was amputated 35 years ago – back in 1982. The tingling is similar to what you feel if your leg falls _really_ asleep, then you change position and you get that tingling / stinging sensation as the blood flow returns. It is very defined as to its location in the “limb”. I can feel the outline of all 5 toes, my heel, my calf and so on, as if my leg was still there.

Sometimes it’s discomfort – maybe in one very specific place – like the outside of “my pinkie toe”, or “my Achilles tendon”, might feel like someone’s pricking it with pins or thumbtacks.

It can also be pain. From mild to awful. Like someone is taking a sharp knife and stabbing it into my knee over and over again.

You may see articles that compare levels of pain, and they typically say that childbirth and phantom pain are at the top of the list, above broken bones, kidney stones, and tooth abscess. Having had three babies, I can definitely say that the intensity of phantom pain can be as overwhelming as labor pain.

It’s usually not that bad! For me, I’d say it only gets that bad maybe once or twice a year. (Usually when I have a fever.) But, I do have times, maybe once a month or every other month, where it’s bad enough that I have a hard time concentrating on my work or enjoying my leisure, or getting to sleep.

But, that frequency (once a month of needing attention, once a year of being overwhelming) is what I experience after 35 years as an amputee. It has become much less frequent over the years. For a NEW amputee, they can experience this pain far more often. It could be a huge help for them to have doula style support managing that pain.

What could a doula or other support person do to help with phantom pain?

Validation: Like with labor pain, one of the first steps is validation – “I hear that you’re hurting. I know it’s hard. I know you feel like you should be able to cope with it on your own, but I know it’s challenging and I’d like to help.”

Knowing about self-help techniques that help with phantom pain

Counter-irritants: One thing amputees may do to manage the phantom limb pain is to cause another pain somewhere “real” to distract them from this pain. This might be biting their lip, pounding their fist on the remaining limb, or squeezing their fingernails into their hands. Counter-irritants can be helpful for many pain sources, but especially for phantom pain, it can give the sufferer a sense of being in control of that pain even though they can’t control the phantom pain. An effective tool for creating this discomfort that doesn’t harm them is reflexology combs. Learn more about them and counter-irritants here. Learn more about the theory of diffuse noxious inhibitory control here.

Heat and massage: I find often, but not always, the cause of my phantom pain in my leg is actually tight muscles in my lower back, near my sacrum. (This usually happens when I’ve had some days of bad posture – like sitting on a soft bed and reading, which is hard on my sacral muscles.) So, heating pads and a good sacral massage can often relieve the phantom pain.

Many of the other coping techniques doulas use in labor, such as breathing, attention focus, movement, baths, and so on can help. Phantom pain is often intermittent, coming in waves (like contractions), so support could look like labor support in early labor: sitting and watching TV or playing games for ten minutes, then helping the amputee manage a 30 second surge of pain, then returning to the movie / game.

In MY EXPERIENCE (others may vary), here are things that didn’t help with phantom pain: Tylenol on its own, Tylenol with codeine, ibuprofen on its own, other NSAID’s, and alcohol. None of it did anything, really, so the self-help, acupressure, and energy medicine were essential to me for years.

What does help? What’s my best magic cure for phantom pain? One Tylenol and one Ibuprofen. Taken together. It’s gotta be both, or it doesn’t work. But together, it’s fabulous. No matter how bad my pain is, it’s gone in 15 minutes after I take this.

I LOVE that I discovered this about ten years ago. It gives me so much more of a sense of control over my phantom pain. I don’t take medication for mild pain – I want to go easy on my liver and taking large amounts of medication is NOT good for your liver. But it helps to know that whenever it gets too much to handle, or when I need to go to sleep or need to be at my best to teach, all I need to do is take a Tylenol and ibuprofen and it will be better in about 15 minutes and will stay better for about 6 hours. I never travel without my emergency stash of one of each pill (ever since that day in Disneyland where I had to buy one whole bottle of each at theme park prices!)

What you could do

As a doula, you know a lot about pain coping in general, and how to sit with someone who is in pain, and now I’ve given you some tips specific to phantom pain. For an “old amputee” like me, we’ve learned coping techniques that work, and we can take the occasional Tylenol/ibuprofen cocktail to manage it.

But a new amputee needs to learn those coping techniques, and they can’t be popping medications every day (because of impact on liver), so they need extra support. If you know any new amputees who are struggling with phantom pain, consider offering your support, even just a conversation about things that might help.